Sunday, 1 May 2016

Wellcome Book Prize 2016 - ignorance rewarding ignorance

*Updating this post: fantastic news, first ME biobank in Europe is officially opening its doors to external researchers on May 12 at London School of Hygiene and Tropical Medicine. More info here.

I resent using any more energy - it truly takes its toll - on the daft neurologist Suzanne O'Sullivan, but the travesty of her winning the Wellcome Book Prize is too important to ignore. I've been trying to correct her harmful nonsense about ME since she won the prize last week, on Twitter. She herself blocks everyone who challenges her, including the mother of severely ill patient Whitney Dafoe whose father, Stanford scientist Ron Davis, is valiantly trying to complete the ME jigsaw.

In serious scientific circles, there is no longer any doubt that myalgic encephalomyeltis/chronic fatigue syndrome (I hate that name, but it is used in research) is  a serious, complex physical illness - though poorly understood, it is NOT psychiatric or psychological. However, that didn't stop O'Sullivan from including ME in a chapter of her 2015 book, It's All in Your Head, a study of psychosomatic illness - or rather a series of anecdotes about patients she has seen. She has published before on carpal tunnel syndrome and non-epileptic seizures (I have not been able to find any papers on ME, unsurprisingly).  Whatever the merits of the other chapters, O'Sullivan has no expertise whatsoever in ME, but that didn't stop the judges from being seduced by her magnificent nonsense (worth noting I think that no one in the research world has heard of Suzanne O'Sullivan, but she is elevated to an ME 'authority' just by having this book published).

Her ME chapter is, of course, wholly uninformed and manipulative, unoriginal in its prejudice and bias. I reviewed the book last year on Goodreads.  Her Rachel chapter is revealing only in what it omits. It's fairly clear to anyone who is informed about ME -  as patient, carer or true specialist - that O'Sullivan is havering (good Scottish word). She's not going to rock the science, of course, that is progressing nicely - but unfortunately she is persuading new gullible readers that ME is an unconscious switch in our heads that flicks on and mimics serious illness. You couldn't fucking make it up that in 2016 this got the Wellcome Book Prize. The judges - I imagine intelligent and decent people - though only one seems to work in medicine/science - simply rewarded ignorance with ignorance.

What is *most* galling is the fawning, ignorant media, who have indulged her all week, themselves almost wilfully ignorant of biomedical research. They assume a mantle of authority. And readers and reviewers of O'Sullivan too become overnight experts in a neuroimmune illness they know nothing of.

I was told earlier by an obnoxious book reviewer (he was making quips about his own hypochondria and full of praise for her book, saying he'd be 'thrilled' to know he didn't have a serious neurological disorder, and wondering why do patients have  a problem with a likely psychological diagnosis) that the ME chapter is *only* 20 pages and that he had no interest in debating further. I told him I've been ill for 33 years, diagnosed by a consultant neurologist, and 250, 000 in UK have ME, so 20 pages is not just 20 pages; and I suggested perhaps it's best not to tweet about a book if you have no interest in discussing the issues. For this, he blocked me. My voice silenced just like that. Basically told to dry my eyes, we have nothing to complain about. A quarter of a million lives already severely diminished, further harmed by O'Sullivan's nonsense. Yes, book bloggers know best. What a luxury to be able to dismiss those 20 pages! He blocked others too who tried to educate him.

Interestingly, no one in the UK media has yet asked Suzanne O'Sullivan about the toxic PACE trial - which has just been in court over failure to share its data (someone on Amazon has suggested there might be a significance that one of the judges works for QMUL, but surely not, that is just too depressing to contemplate that judges would not be independent. Though the way this illness has been relentlessly politicised since the nineties truly stinks. Personally, I don't believe there was any 'fix', just lazy, old prejudices about ME being confirmed). O'Sullivan predictably praises GET/CBT in her book - cannily, without actually naming PACE - as the most effective treatment, with no reference at all to the harms of graded exercise. Just as she praises Simon Wessely, without naming him. His name, of course,  now carries too much baggage. Her claim that he is 'the person in the UK who has taken this illness the most seriously' is, I'd confidently say, a giant whopper (there are a few in the chapter). She conveniently omits the 1980s' UK specialists: Melvin Ramsay, Peter Behan, Betty Dowsett, John Richardson, and Nigel Speight (my illness was taken very seriously in 1984 by Professor Behan, then Doctor).

And, of course, she disingenuously conflates ME and 'chronic fatigue', just like those psychiatrists she emulates. O'Sullivan - and those like her - seek to control a dying narrative. She has been silencing those who politely challenge her. I was blocked when I simply asked her this. She lives in a little bubble on Twitter, which only lets praise in. Patients with ME have no right of reply. Is this not quite strange for a scientist? The prize is about stimulating scientific debate, one wonders what she is so afraid of. The truth, perhaps?

It has been gruelling having this illness for 33 years, and indescribably exhausting trying to educate others, yet still we are facing this prejudice and nonsense from a small, self-congratulatory club in the UK (USA are miles ahead, although we do have fantastic initiatives here like Invest in ME annual conferences). As someone else said on Twitter, how much evidence do these people need, what will it take? What do they all gain from acting like petulant children, fingers in ears?

I cried when I read that O'Sullivan had won the Wellcome Prize. Could this really be the most deserving book on the shortlist? - it is not even well written, the somewhat toneless chapters all blur into one (not to mention that the made-up patient name 'Camilla' is alienating, but that is a trivial point).  I have now run out of words, trying to educate the seemingly ineducable, but I do still have my precious novel. It remains my weapon. Two of these books tells the truth about Ramsay-ME, one recycles nonsense:


Mary Schweitzer said...

Thank you for using up precious energy to write this. The single most important requirement for diagnosing patients with "somatoform" conditions, or being psychosomatic, or it's all in your head, or some version of that - is that there be no physiological explanation for the symptoms. That is so patently misguided with M.E. that, as the Countess of Mar stated in Parliament, it is intellectually embarrassing to continue to say so.

I have had M.E. since 1990, after a vicious outbreak of EBV (mono, glandular fever) swept through the university where I was a professor, attacking not only the students but many professors - three from my department alone, including myself. I kept going as my symptoms got worse and worse, until utterly collapsing in 1994. I had blackouts, absence seizures, expressive dysphasia, ataxia, disorientation, partial paralysis, extreme light sensitivity, double vision, poor short-term memory and difficulty forming memories at all, and massive confusion (I once poured a pot of coffee into a silverware drawer convinced it was a cup).

I had severe pain behind my eyes and in the back of my neck and muscle pain 24/7, and also headaches the level of migraines, but symmetrical.

But I have been in a number of studies. I was found positive for immune defects: natural killer cell function of 2-3%, 37kDa Rnase-l defect, abnormal cytokine patterns. I had abnormal SPECT scans and very abnormal CPET scores. I could not pass a simple romberg test (fell over as soon as I shut my eyes!) Probably because of the immune defects (or perhaps there is an iterative process at work), I was positive for HHV-6A (one of the first ME patients tested by the co-discoverer of the virus), cytomegalovirus, and recurring EBV. In 2009 I tested positive for CMV and HHV-6 in my spinal fluid.

I have been fortunate in being able to receive treatment with an experimental immune modulator, which I have to pay cash for. But it has allowed me to be able to walk, drive a car, read a book, and attend my son's wedding. Unfortunately, I can't go off it - my immune system crashes and within a year I am once again bedridden in pain and confusion. But my husband paid for it until his death three years ago from cancer; he left me a fund to continue the drug. There are alternatives, but they have side effects - and the drug of choice for CMV and HHV-6 makes my liver markers shoot up.

The evidence suggests that, without the immune modulator, I have a chronic viral infection of encephalitis and meningitis - hence encephalomyelitis. (Add muscle pain and you have Myalgic Encephalomyelitis, or ME). The CPET scores were so bad that, just by that alone, I would be classified as having a serious cardiac condition and be awarded permanent disability by the US Social Security Administration.

Now imagine someone like me being told that I have inappropriate illness beliefs (the UK version) or I don't know how to handle stress (the US version) - told to seek psychiatric counseling and a graded exercise program. It would not just be a waste of money and time - it would be DANGEROUS.

I really don't care what Suzanne O'Sullivan wants to write about.

Mary Schweitzer said...

That is, I don't care what Suzanne O'Sullivan wants to write about - but nonfiction book prizes should only go to authors who have read the scholarly literature - all of it, not just whatever agrees with her point of view - and actually know something about the subject they have chosen.

nmj said...

Thanks for your comment, Mary. None of us really want to care about what she writes, but UK is small, the media has been wall to wall O'Sullivan this last week, and I find it disturbing, especially when people in the book world are going gaga over her, with absolutely no idea of the harm they are endorsing in her Rachel chapter. Anyway, they are the poorer for being misinformed by her, and the sycophancy will surely pass.

nmj said...

Hi, Mary, Our comments crossed last night, I had not seen your added words. The Wellcome Book Prize is for fiction and non-fiction, the criteria from the website:

'The Wellcome Book Prize is an annual award, open to new works of fiction or nonfiction. To be eligible for entry, a book should have a central theme that engages with some aspect of medicine, health or illness. This can cover many genres of writing – including crime, romance, popular science, sci fi and history.

At some point, medicine touches all our lives. Books that find stories in those brushes with medicine are ones that add new meaning to what it means to be human. The subjects these books grapple with might include birth and beginnings, illness and loss, pain, memory, and identity. In keeping with its vision and goals, the Wellcome Book Prize aims to excite public interest and encourage debate around these topics.'

As you can see Suzanne is not encouraging but stifling debate by blocking anyone who cares to challenge her. Ironic also that the Wellcome Trust gave £10,000 to the ME/CFS Research Collaborative last year to support research - and yet this year awards a doctor denying the reality of the illness.

I attended a session of the Collaborative last year and Professor Montoya of Stanford apologised to ME patients for the way the medical profession had treated them. I was honoured to shake hands with him.

Mary Schweitzer said...

There was SARCASM in my listing the requirements for NONfiction, because what she wrote was fiction.

I meant no disrespect to the reality within fiction.

And of course she is stifling debate. She does not appear to possess critical reasoning skills.

But I've been down this road so many many many times. I have heard this claptrap after the son of a good friend died of myocarditis (the viruses had gotten into his heart) after having a "CFS" diagnosis through high school. I have lost many friends in the past few years. I am getting crankier about these people.

My sarcasm was apparently too tight.